Remember George Jetson? And his ill-fated stint on the treadmill? And him begging his too-cute-for-him wife to get him off the crazy thing? I know how George feels. I’ve never been a fan of the treadmill in general, much preferring to get my cardio fix outside or slog my miles on the elliptical, but this figurative treadmill I’m on now is the pits. Stop the ride, I want off.
I mentioned that I have a heavy issue on my mind and wasn’t sure what to do about it. Yesterday was intended for settling the issue and making the necessary plans to move forward. Instead, it was a craptastic example how nothing goes as planned or as expected on this damned cancer “journey.” Having just come off a week of antibiotic hell after my latest reconstruction revision, craptastic was the last thing I needed. And yet, in typical cancer “journey” fashion, it’s got to be as complicated as humanly possible.
Yesterday started with a trip to the dermatologist for ye annual mole check, and that visit ended with 2 shaved-off moles being sent off for biopsy and the unceremonial removal of 7 or 8 skin tags. Being a melanoma victim, I’m pretty serious about any weird-looking spots on my skin and don’t hesitate to point out ones that need to be lopped off. Like the Queen of Hearts from Alice in Wonderland, I say “Off with their heads.” I was a walking Band-Aid when she got done with me. Then I headed straight to my next appointment, stop #2 of 3 on the Monday doctors’ tour, which should have been a simple fact-finding trip but ended up being an exercise in frustration and confusion.
Here’s the deal: when I was first diagnosed, way back when in a time that now seems like another lifetime entirely, I knew that at some point I would need to have my ovaries removed. The oophrectomy, in addition to being an outstanding Scrabble word, was a foregone conclusion. Think about it: ovaries produce estrogen and progesterone, both of which provide the fuel for my kind of cancer. Cut off the fuel supply and starve the cancer and eliminate any hope it may have of coming back.
Then the post-mastectomy infection reared its ugly, ugly head, and I wasn’t well enough to undergo another surgery for quite a long time. (Some certain people who read this blog don’t like to see mention of said infection, which I totally get, but it’s kinda vital in the chain of events, so let’s all just suck it up and read on; it was a fluke infection for which no one can be held accountable. File that one under “shit happens.”) Moving on….Then once I was well enough after the infection, I was sick to death of sickness and near-deathness, so the idea of another surgery was most unpalatable to me. I wanted and needed — and deserved, dammit — to get back to “normal” for a bit before going under the knife yet again, so the oophrectomy was postponed. But it remained a constant, a “when” not an “if.”
My stint back to “normal” was short-lived, however, because once I was recovered enough from the mess last summer, it became apparent that we needed to go ahead with reconstruction asap in order to give the now-healed chest wall a vascular system. That poor chest wall had sunk and had been sliced & diced & excised enough times that it needed fresh blood as much as Edward Cullen and his crew does. So the next step in the unscripted and not-nearly-as-exciting-but equally-dramatic-as-Eclipse saga that is my life, we commenced with The Big Dig and relocated blood vessels from my belly to my chest. After a long-ass surgery and a Hades-esque stay in ICU, the blood vessels bloomed in their new home and all was well. With my highly skilled and kick-ass surgeons, the Drs S, The Big Dig was a screaming success and I seemed to be on the right track.
Revision #1 in August and Revision #2 last week were successful as well, thanks to the original Dr S, who never ceases to amaze me with his surgical talent and artistry. That man is pure genius in the OR. Can’t recommend his work highly enough.
Having survived all these surgeries brings me to the here & now, which is the pursuit of the oophrectomy. Yesterday’s visit to the OB-GYN was a fact-finding mission for a surgery that I know in my heart of hearts I should have. Then the OB-GYN throws me a nasty curveball by questioning why I want to do this.
“Want” isn’t the word I would use for my feelings toward the oophrectomy, but I understand that it is elective compared to an appendectomy, say. But no, I don’t want to do it. I need to do it, and I’m being responsible by volunteering for it. But I certainly don’t want to do it.
Almost as much as I don’t want to have my carefully-thought-out plan upended. I listened carefully as the OB-GYN explained the permanence of removing one’s ovaries, the risks of the surgery, and the menopause it brings on. I’m there, I get it. I’m young for breast cancer and for removing my lady parts, but I’m way past childbearing and have been in menopause for the last 18 months, so I am well-versed in the hell that it is.
She spent a lot of time explaining that surgical menopause is abrupt and intense. Instead of the body gradually decreasing the amount of female hormones at its own pace, it’s like an on/off switch. One day you’re normal, the next day you’re in menopause. I’m still not sure what part of my 18 months of chemically-induced menopause she didn’t get, but suffice to say it was like banging one’s head against the proverbial wall. Bang! Bang! Bang!
Some days there’s not enough alcohol in the world to cope with these detours and speed bumps on the cancer “journey.”
(Ooooh, I think I feel a tshirt slogan coming on.)
The mess of the OB-GYN appointment continued when she was finally satisfied that she’d drilled the cons of the surgery into my head enough to examine me. She determined right away that doing the oophrectomy laproscopically (i.e., through my belly button instead of via an incision) won’t work because of the abdominal scar from The Big Dig. She thinks there’s too much scar tissue and the skin on my abdomen is too tight to allow her to maneuver laproscopically. This is one opinion, and a perfect example of why a pro-active patient solicits more than one. Nothing about my ab scar is unusual or unexpected, just makes a laparoscopic procedure trickier.
So the option to not doing the surgery laparoscopically is making another incision. She wants to make another incision, below the existing 17-inch racetrack. Another incision. Now I’m thinking there aren’t enough cuss words to cope with these detours and speed bumps on the cancer “journey.”
(A companion t-shirt, me thinks.)
A most unsatisfying appointment.
There was just enough time for Amy and me to grab lunch before moving on to my next appointment. And yes, by lunch I mean drinks.
My next appointment entailed removing the two sets of stitches from Revision #2, which I expected, instead of removing them with tweezers or little scissors, there was a blade, which I did not expect. The downside to those super-tiny, uber-tidy mucho-skilled plastic surgeon stitches is that they’re a bit harder to remove than conventional, Frankenstein-style stitches. The blade was like an X-acto knife on steroids, and after the day I’d had, it scared me a little bit. But the good doctor held my hand, soothed my jangled nerves, and tut-tutted over me like the kindest of caregivers, and the stitches were no more. You can barely spot where they used to be because the incisions are so small, and the human pincushion lives to see another day.
But what about those ovaries? What to do about those?
The saga continues.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
If it’s not over until the fat lady sings, I would like to know what time she’s scheduled to take the stage. What’s that — there is no schedule? The fat lady sings when she’s good & ready and not one minute before? She is a diva.
The idea of all of “this” being over is a recurring one. By “this” of course I mean cancer and all its dangling, hangey-on-y ways of lingering and permeating myriads aspects of life. I was reminded of this (because cancer and its many tentacles are never far from my mind), while reading one of my new blog friend’s blogs. His wife just had a mastectomy in northern California, and he posted on his blog to tell all of her friends & followers that the surgery was over. He actually used the phrase “it’s all over” and then chuckled at and corrected himself, knowing full good and well that they have miles to go before they sleep, as Robert Frost so eloquently wrote in “Stopping by Woods on a Snowy Evening.”
Oh, how I love that poem. Robert Frost was a total stud. The imagery he creates, seemingly effortlessly, resonates to this day. I’m totally in love with the image in my head of his horse, which he carefully crafts with such an economy of words. I can see his horse’s big, gentle eyes, beseeching his master and wondering what in tarnation the pair of them are doing hanging out in the woods on a cold, dark night. I can almost hear his harness bells’ jingle, and I’m swooning over the phrase “easy wind and downy flake.” Love it.
While some first-rate poetry is a nice distraction, the subject remains. The idea of “being done,” or “it being over,” doesn’t really apply to cancer. As I pondered Paul’s blog post I realized this truism, and even though I’m a rookie in the “cancer journey” I’ve learned a lot and I know this to be true: it’s never over.
Here’s the thing: the “cancer journey” is long. It used to be the road less traveled, to quote Mr Frost again, yet nowadays is more and more common. Too common, as every day the numbers of people diagnosed continue to grow. For breast cancer alone, the chances of getting it have risen from 1 in 20 in 1964 to 1 in 8 today. In less than 50 years, our chances of contracting this damned disease have leapfrogged considerably. Which means more and more people will find themselves on a “cancer journey,” and I wouldn’t be surprised if those numbers continue rising.
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I’ve learned this much on my “cancer journey.” I’m trying to stop looking for the finish line, to avoid squinting for the goalposts, somewhere off in the distance. Since it’s never truly over, I’m gonna just keep on truckin.’
I was out cold in the OR, having unspeakably nasty things done to my body to restore the damage wreaked by the post-mastectomy infection. Whew!
The first couple of days of week 1 are pretty hazy, thanks to my BFF morphine. Love that stuff. But my BFF knows its proper place, and we have short but infrequent get-togethers. This time around, my BFF gave me a terrible headache, which was quite rude, so I bid adieu to the pain pump as fast as I could.
Let’s start from the beginning. Or as much of it as I can remember. Readers, feel free to chime in when you notice I’ve left something out. We got to the Medical Center on time (6 a.m.) and I got right into my pre-surgery room. My beautiful gown and compression stockings were waiting for me, but I waited until the very last minute to don them. After some precursory steps, like accessing my port for the administration of the really gooood drugs, a gaggle of white coats entered the room.
Dr Spiegel led the way, with her PA Jenn next, followed by their resident, Dr McNight, then my favorite plastic surgeon. He was the only guy in the room. Yahoo, girl power! He had a cool wooden box in his hand and when I asked if it was a present for me he gave me one of his looks. Someday he’ll appreciate my humor. Inside the box was not a present, but his loupes, which sadly he didn’t offer to model. I’d love to see him in a pair of goofy glasses.
Dr Spiegel and Jenn started marking my belly and I’m so mad I didn’t think to take a photo because it was cool. They used a blue sharpie for arteries, a red sharpie for blood vessels, and a black sharpie for incision lines. Lots of arrows and lines later, there was a roadmap of sorts. Very cool. At one point, Dr Spiegel wasn’t happy with an incision mark so she had Dr McNight scrub it off my belly with alcohol and re-do it with the black marker.
After that it was time to head to the OR, and they must have given me a cocktail in the pre-surgery room, because I don’t recall anything after the sharpie party. When I woke up, some 8 hours later, I felt pretty good…but it was because I was wrapped in the loving embrace of some big-time anesthesia. Dr Ashmore, my hand-picked anesthesiologist, did a fantastic job of putting me to sleep, and more importantly, waking me back up. It was good and restful.
I’m not too sure about whether I was in a recovery room or went straight to the ICU, but once I got to ICU I recall that it was HOT. And I’m a Texas girl, so I know about some heat. The docs had warned me that the room would be warm, to help my newly transplanted blood vessels learn to regulate themselves in their new northern home. But wow, was it hot. Between the high temp, the two heaters, and the squeezing of the compression hose, I was roasting. I tried to be nice about it, and I think I only lost it once, when I begged one of the ICU nurses, probably Carol, to please please please just crack the door and let some AC in. Just for a second. She declined my request.
I spent the night in ICU, but thankfully the flaps, aka former belly skin & fat that were magically transformed into breasts, behaved and there was no drama (other than me begging Carol to crack the door, turn down one heater, turn up the thermostat or bring me a gallon-sized frozen margarita). The flaps had to be checked every hour, yes every hour, with a hand-held doppler. There were (until yesterday) some wires stitched on top of my chest that somehow transmitted audible sound of the blood rushing through my newly transplanted blood vessels through the doppler. It sounded a lot like a fetal heart monitor. And we heard it a lot. My flaps were cooperative, and the nurses were able to hear the blood rushing almost instantly after putting the doppler onto my chest. One nurse told me that sometimes it took 20 minutes to find the sound. I started to panic after a few seconds of not hearing it, so can’t imagine the size margarita I would need if it took 20 minutes to register.
The ICU room had a wall of windows with mini blinds, and the nurse was right outside the door at a desk looking into my room if not attending to her one other patient. Some people might think that would make you feel very safe and catered to, but it made it hard to sneak anything by her because she was always watching. If she wasn’t watching, somebody else was walking by. It was a constant parade of doctors, residents, nurses, PCAs and other people peeping into my room.
I got released from ICU after some really delicious jello and a contraband peanut butter & jelly sandwich (liquid diet…pffft) into a regular room on the 8th floor of Dunn Tower. Lovely view out the window of the heart of the Texas Medical Center, and more importantly, no heaters. It wasn’t exactly chilly in the new room, but so much better than the ICU room. Nevertheless, I did beg to have the tight, scratchy, hot compression stockings removed. Those nurses were not swayed by my shameless begging.
Apparently the docs were pretty pleased with their handiwork, and if you missed Trevor’s and Amy’s guest blogs while I was too loopy to post, go back and take a peek. Long story short, the flaps were cooperating, the morphine headache abated, some regular food arrived, and life rolled on. At some point they moved the flap checks to every two hours instead of hourly, which was mighty nice. It’s amazing how your perspective changes in a situation like that. After umpteen hours with no food, a simple PB&J was a delicacy. After being awake most of the night, a short cat-nap seemed a decadent luxury.
I’m sure I said some goofy stuff and probably offended someone at some point with my off-color humor. Apparently I channeled my mom, too, telling my friend Laura who works at Methodist and who visited me several times a day, “Thanks for dropping by.” Every time she came by. I was just being mannerly and didn’t realize I’d seen her a few hours previous.
There are conflicting reports on how the turf war between the Drs S played out. All parties are being quite cagey on the details of who did what part of the surgery, and like a good murder mystery, we may never know who real killer was. I have my suspicion, but even asking point-blank hasn’t garnered an answer, so we may have to label that information “permanently classified.”
I did get to skate out of the hospital a few days ahead of schedule, and even though I received impeccable care, I couldn’t wait to get out of there. Coming home is always sweet, but never as sweet as when I’m leaving a hospital room.
I have more mobility than I did after the mastectomy, but not as much as I’d like. The first few times I had to get up without using my arms but relying on my legs and abs, the hip-to-hip incision on my tummy protested mightily. But it got better every time, and now I do it almost without thinking about it. Almost. I still can’t walk completely upright because the incision is still very tight, but I’m not quite the Quasimodo I was in the hospital. I get a bit straighter every day.
I came home with 6 JP drains this time, and had to upgrade my VB sling bag to a bigger VB bag that could accommodate the drain party. I knew from last time around that 4 drains fit nicely, with a little extra room for my Blistex, some folding money, and a teeny ziplock bag of pills, should they be necessary. Six drains would have burst my handy little bag right open. Wonder how many drains this lady is toting in her VB bags?
I had my first real shower today, not counting the seated variety the hospital offers. Again, it’s the little things we take for granted. I’m down to just 2 drains and back to my sling bag, thanks to Jenn removing the 4 drains up top yesterday. She gave me a good report; everything looks good and is healing nicely.
While I feel a whole lot better and am ready to get back to normal, my handlers think one week post-op is a bit premature to jump right back into the day-in, day-out routine. I am trying to take it easy. I’m resigned to the fact that I’m back to one outing a day for a while, and sadly, a doctor’s appointment counts as an outing. Yesterday I had a small entourage escort me to see Jenn, and we had a bite of lunch (sans margaritas) beforehand. The handlers insisted on snapping a photo of this maiden voyage, and there was some talk of me earning a margarita for every device I had removed at the subsequent appointment. Between the two doppler wires and the 4 JP drains, somebody owes me 6 margaritas. No salt.
Although I complain about going to the med center, there’s always something interesting to see along the way. Getting out of the suburbs is a good thing, and there’s a whole ‘nother way of life in this big city of ours. Last time I was at the med center for some testing, I saw this car and had to take a picture, to show Macy. I knew this car would appeal to her:
and had to snap a picture. Yes, it is a zebra car, complete with a long tail. Gotta love the big city.
Well, sort of. I’m sitting at my computer but feel pretty fuzzy-headed. At this time on a Sunday morning, I would normally be on the tennis court, earning my beers after 3 sets, but there’s a new normal nowadays, and tennis will have to wait.
I figured I’d better get back to blogging before my guest bloggers took over permanently, making me a redundancy. Big thanks to Trevor and Amy for filling in for me while I was unable to think straight or type coherently.
My handlers have established some boundaries for me, which I apparently need. Visiting hours today are 2 to 4 pm, and tomorrow from noon to 1 pm. Bring a brown bag and visit awhile, but don’t get your feelings hurt if you get kicked out. My handlers are determined to make sure I don’t overdo it; I have no idea why they think I need that.
It’s pretty great to be home, and while the nursing care at Methodist was the best I’ve ever had, nothing compares to home sweet home. No one woke me up last night to check the new skin or peek at the incisions or take my temp and blood pressure. I’m pretty mobile but still walk all hunched over. I think Amy compared me to Quasimodo. I’d agree with that characterization, but must note that I don’t have a hump on my back!
Dr Spiegel said not to push myself to straighten up; the incision on my belly is pretty tight, and if I try to straighten up I run the risk of tearing the incision. I also need to be careful to limit my arm movement and not raise my arms above my head, because the microsurgery requires such tiny stitches that they’re easily ripped.
It sure would be nice to have a non-complicated recovery this time around. Fingers crossed.
I arrived back at the ICU this morning with Amy Hoover who will be staying the night with Nancy tonight. Let me pause to thank Amy and Christy Burrmann for lunch yesterday and to Staci Martinez for sitting with me all day. That’s a lot to put up with.
Nancy is very alert today and in a very good mood. Her pain is under control and she is eating well. The nurses here have been terrific, Cindy and Carol have both been very attentive and helpful – they don’t mind applying chapstick. And David the PCA even fetched coffee for me and Amy. Overall this is the best care she has had during her hospital stays and it’s generally been pretty good.
They checked on her every hour last night so she didn’t get too much sleep though. They have ordered a room for her but they won’t let her out of ICU until she sits up in a chair for an hour. They just wheeled it in, this is gonna hurt.
I just visited briefly with both Dr. S’s about Nancy’s surgery. They are done and she is having the surgery wounds dressed. I will get to see her in about an hour or two once she clears recovery and is moved to ICU. I will post another update once that happens.
Both doctors were all smiles and they expressed a lot of satisfaction with the outcome. I’m not going to post the details – do you really need to know how many grams each breast facsimile weighs? – but they seemed pretty proud of themselves about sculpting a nice new figure for Nancy. We shall see, Nancy has expressed that mostly she just doesn’t want to look like “ground under repair” anymore if I can borrow a golf term.
So it sounds like good news. Look for at least one more update tonight.
Update: I forgot to mention the surgeons did find some spots of active infection still after 200 days of antibiotics. Incredible. One benefit of this procedure should be to help by physically removing most or all of it. And it confirms the value of Nancy’s amazing persistence in never missing a dose. Unfortunately it also means the drug-taking will continue – and these aren’t the fun kind.
So it’s Sunday morning, I’ve got my coffee to quell a roaring headache (from the pollen and not the champagne that Mr Cremer pours with a heavy hand. I love a heavy pour). I should be pulling everything out of the pantry and organizing it (again) in a manner that will make it easy for the little people who live in my house to find exactly what they need the precise moment in which they need it, because I’m gonna be parked in a room at the med center for a while and unable to do their bidding.
Once I finish that, I need to gather up all the laundry in this house and wash, dry, hang/fold it all and return it to its original home in each recipient’s dresser and closet, then try to convince those recipients to wear the exact same clothes (turn ’em inside-out if you need to for variety) for the next 3 days so that when I leave the house for the hospital, the chore I really hate will remain completed for more than 2 hours.
I still need to put away the groceries I bought yesterday (I already put the perishables away, as soon as I got home, so don’t worry about spoiled milk and moldy cheese). Then I need to clean out the fridge and discard anything that won’t get eaten while I’m gone so it doesn’t confuse the folks who try to eke out a subsistence in my absence.
One of the big tasks hanging over my head is to sit down with the calendar and make a master schedule of all the events I will miss in the next little while, to ensure that the kids get where they need to be and that Trevor and my dad (who’s coming to help run herd on my little calves) know who’s coming and who’s going. Also need to take a peek and see what events are upcoming for which I need to stockpile, be it a birthday gift or card that needs to be readied.
Instead, I’m getting ready to go play tennis and scratching my head at one of the weirdest stories I’ve ever come across. No wonder I can’t get anything done; this is all-consuming.
If you missed this story on your local news, you must read it now. Thanks to Amy Hoover for calling my attention to what is by far the craziest story I’ve heard in a long, long time.
It will take you 30 seconds to read it, maybe a minute if you slow down to read thoroughly and fully digest all the details, unlike some of us who skim wildly to find the juiciest bits.
I don’t even know where to start with this one. I’m glad the story was so short, because there are so many points on which I’d love to wax poetic. But where to start?
Ok, I’ll start with the woman’s photo. My first thought was, I sure hope she was driving to the hair stylist’s because she needs to touch-up her color right away. Yikes! I haven’t seen roots like that since Macy pulled the world’s biggest tap root out of our flower garden last summer. I mean, that sucker was as tall as Macy. And now this woman’s roots rival that super weed.
Next: her ex-husband was in the passenger seat, as she’s driving to meet her boyfriend AND grooming herself for said meeting. Huh??? Presumably it was her car, since the ex was in the passenger seat, so why was he going, too? I could see it if he were dropping her off, but what in the world was he doing in the car? And more importantly, what was he going to do once she got to her boyfriend’s house? I’m assuming he knew what activity she was engaging in at the same time she was driving a car, so why didn’t he tell her to pull over and let him drive so she could finish her other task.
Moving on: she’d been busted the day before this insanity for DUI and driving without a license. So driving while shaving her nether-region is what she does while sober? Holy tequila shots, what does she do while drunk? That must be a whole ‘nother story. Probably much longer. And crazier.
And finally: the woman and her ex drove a half-mile after the crash and exchanged seats; ok, I can see how that makes sense in the mind of someone crazy enough to do what she was doing. But my question is: if the officer had witnessed a similarly insane situation, why on earth didn’t he share that one, too?
Now I’m really curious.
I wish I knew how to make this blog play music. I bet it can, since I’m pretty sure it’s smarter than I am, but I haven’t figured it out yet. I need a jazzy yet foreboding score to set the scene. Think Star Wars theme song combined with Indiana Jones theme Song with a little West Side Story mixed in.
I knew this was going to happen. I was partly dreading it, but a little curious too to see how it would play out. It played out, all right, and yesterday by 10:30 a.m. I was exhausted by it. Thanks to a beautiful bottle of Vueve Cliquot that Trevor presented at dinner last night, now I’m over it.
But it’s such a great story, I must share.
Those of you who’ve been along for the ride since this summer, when I was updating my trials & tribulations via Caring Bridge, know that I have an especially close relationship with my plastic surgeon. I’ve written a lot about the many ways I have tweaked him, and I hope to continue to do so here. In fact, I plan to. I will invent new ways to tweak him if they don’t present themselves organically, because I love him and really enjoy tweaking him. He likes it, too. Trevor and I used to joke while endlessly waiting for Dr S during my multiple hospitalizations last summer that I would write a screenplay when this was all over entitled “Waiting for Dr S.” The title will be “The Tweaking of Dr S.” He always showed up, and he always brought his A-game to my bedside. I love that man.
I had great and ambitious ideas about transferring all my Caring Bridge posts over to this new, improved blogsite but it hasn’t happened. Yet. So for now, if you’re interested in reading (or re-reading) about the tweaking of Dr S, I’ve copied & pasted one of my faves at the end of this post.
As I’ve said before, surgeons and bedside manner don’t always go together. No peas & carrots there.
Because I don’t have enough on my plate or on my mind in the last few days before the big surgery, I had to go see Dr. S one last time. Personally, I though we had covered everything, and whatever we missed I certainly had covered with Dr Spiegel. But Dr S insisted I come back, one last time, to be extra sure everything is covered. I asked a simple question. I just wanted to know how he and Dr Spiegel are dividing up the work involved in this long, complicated surgery. Seems simple, right?
A little background: once we decided on the type of reconstruction surgery, Dr S referred me to Dr Spiegel. (Correction: once the post-mastectomy infection ruled out the easier option of tissue expanders to implants as my reconstruction, the option with which I was left was DIEP. Nitpicky? Perhaps, but I like full disclosure.) I did not want to go see Dr Spiegel. Nothing personal, I had just had it up to here with doctor’s visits, and I didn’t want to add another doc into my personal rotation. I’m 100 percent satisfied with the care I get from Dr S, and don’t feel the need for another doc. I was still under the mistaken idea that I could pretend to be a normal person in the interregnum between healing from the infection and reconstruction. Wrong! There is no “normal” anymore, so no interregnum.
I didn’t want to do it, but I did, and I have to admit, I’m glad I did, and Dr S was right. Yes, I said it: Dr S was right.
When Dr Spiegel told me that she and her assistant usually do the DIEP procedure themselves, but that Dr S was welcome to be involved, I got nervous. He doesn’t like to “be involved,” he likes to be in control; that’s why he’s so incredibly good at what he does.
It sounded so simple coming out of her mouth: She and Jenn usually handle the procedure but if another plastic surgeon refers a patient and wants to “be involved,” he is welcome.
I guess I envisioned two teams working together toward a common goal. Teamwork! Division of labor! Cooperation!
Back to the simple question: Dr S didn’t quite answer me yesterday when I asked him exactly which part of the surgery he’ll be doing on Wednesday. See, Dr Spiegel may be a bit more experienced with microsurgery (the part of the DIEP procedure that involves harvesting blood vessels from my belly and reattaching them in my chest). This is presumably why he referred me to her. He is exceptionally good at the “artistic” side of plastic surgery, and I know beyond a shadow of a doubt that he will do a phenomenal job.
To me, finding out which surgeon is doing which part of the surgery is a perfectly normal thing. If I hired two laborers to do work in my home, I would ask which one would be doing which part of the job.
Dr S understandably didn’t want to disclose too much, but my guess is that Dr Spiegel do the blood vessel part, and he would do the transferring of skin and sculpting that skin into a nice rack. He also said that any revision surgery and all my follow-up visits would be with him. Ok by me.